Awareness and Support for Alana with Hypophosphatemic Rickets

Story Hero: Alana
Location: orlando, fl
RARE Condition: hypophosphatemic rickets

Mother, Natalie Sanchez, is new to the world of rare disease. At the age of two, her daughter was diagnosed with Hypophosphatemic Rickets.

Hypophosphatemic rickets is a form of rickets that is characterized by low serum phosphate levels and resistance to treatment with ultraviolet radiation or vitamin D ingestion. The term rickets evolved from the old English word wrick, which means “to twist.”

Sanchez noticed that her daughter is smaller than most children at her age. At age two and a half, she is the same height and weight as Sanchez’s 11 month old son.

“They always confuse them for twins,” she says.

Alanna is constantly in pain after simple tasks like walking or lifting herself  to get out of bed. She has severe bowing of the legs and takes her medications five times a day.

“She is a trooper! We are here to support her in anyway we can.”

To help bring awareness to her daughter’s condition, the Sanchez family have made their own Rare Disease Day at their oldest daughter’s school.

“We will have the kids wear jeans and donate a $1 for a ribbon they can wear for the day and excuse them from wearing their uniform. This may not be much but every little bit helps bring awareness.”

But Sanchez has taken even bigger steps to highlight the need for awareness in the rare community.

“I have even gone as far as to tattoo the symbol for The Global Genes Project with her name on my body,” says Sanchez, who feels the tattoo works as educational conversation piece. “Everywhere I go people ask and I feel like, in a way, I’m helping make people aware of this movement. I wear my bracelets and ribbons along with my family daily to show Alanna all the support we can.”

Speak Your Mind

*